Get Out of Jail, but Don’t Pass Go

By Lisa Baker

Mom has been discharged from the hospital to a rehabilitation facility.  She will be here for 20 days.  We hope at that time, she will be able to return to the assisted living facility she had been at before her hospital stay.

IMG950063I talk about my parents and their facilities, but there are many families out there who aren’t able to afford any facility.  They often hold full-time jobs outside of the home and come home to care for their loved one for the remainder of the day and evening.  These people often are married, have children and a home of their own that needs tending. It isn’t easy to care for a dementia patient. Sometimes they don’t eat or drink.  Often, they refuse to bathe.  They sometimes will sleep all day only to be up all night.  They try to do the things they used to do when they were younger such as cooking, except now they forget they turned the stovetop on, or that the milk goes in the refrigerator and not the pantry.

The caregiver in this type of situation is spread very thin. They are trying to juggle way too many balls. They need help and are way too tired and short of time to find help. Often, they don’t have the extra funds to be able to use a facility or hire extra help to come inside the home.  In this type of situation, it’s even harder for the caregiver to take care of themself.

FB_IMG_1534039807489In fact, at a Teepa Snow conference for the positive approach to care, she told us that it is important that you have a group of trusted helpers to care for your loved one.  You can’t do it alone and take care of yourself.

For now, Dad is doing OK.  He still tries to get out of the door every chance he gets.  He also still stumbles over his words.  Many times just saying, “blah blah blah blah” as if he is really saying words.  I have many times thought surely at some point our lives will settle down when they get used to their new homes.  Now, I don’t think our lives will ever settle down.  There will always be something with them whether it’s another UTI or behavior issues that require a medication change. Things will only settle down when they are gone. Then, we will miss them terribly.

Sorry folks, I’m still realizing that we lose an important part of them each day. There is such a huge difference in them now and even one year ago.

In closing, check out this last picture.  It gives you some ways to take care of your brain. Until next time, make memories!

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Where Did The Time Go?

By Lisa Baker

Has anyone really looked at the calendar today?  Where did January go?  Here we are one month into 2019.  Time goes by so fast.  I talked to Dad this morning on the phone; it was hard to understand all that he said.  From what I could piece together, he is tired of sitting around and no one coming to visit him.  I tried to explain to him that both my husband and I have been sick.  He told me he has never had a cold, and that shouldn’t stop us from coming to see him.  He wants to see Mom and go to his house.  He thinks he can stay by himself.  He wants to walk in the yard and in the road so he can go wherever he wants.

He thinks that no one watches him at the facility.  It doesn’t matter how many times you try to tell him that staff watches him, he can no longer comprehend that he cannot be alone and that he is being watched.  He cannot communicate because he can’t verbalize what he wants to say.  He repeats words over and over thinking that he is completing his thoughts.  Dad will never again be able to be alone.

Right now, Mom seems to be doing OK.  She has been a little dizzy and has had some pain lately, but she seems to be settling in at her new facility.

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I want you to sit down and think about this: you can’t speak clearly, and you can’t remember which words to use to express your thoughts.  You feel so isolated and alone because you are having huge communication issues.  Can you begin to understand how a dementia patient feels? How about the family that is trying so hard to keep their loved one at home? At this point, it doesn’t matter if they are in a facility or at home.  If they are at home, you or someone must be with them 24 hours a day, 7 days a week. If you have no help, you start to feel like you are losing your mind too.

Now imagine you are married.  Your spouse works outside the home.  You have to care for your children, keep up with your house work, prepare meals, wash clothes, and help your kids with homework. Now add a loved one with dementia to the mix.  Imagine they are at a point where they don’t want to bathe or eat. If you thought you had your hands full before, you were dreaming.  You are very quickly wearing yourself out.  You need help. Is it any wonder that caregivers for a loved one with dementia stand a very high chance of getting it themselves?

So what are you going to do?

Give up yourself completely? Find extra help who you will have to pay? Start looking at long term care facilities? The answers to all these questions and many more vary from person to person and family to family.

I do not have all the answers, right or wrong.  I can only do what’s best at the moment for myself and my parents.  What can I tell you then?  Well for me, I almost immediately made an appointment with my doctor.  I had no idea just how bad things could be, but I knew I would need help for me.  I knew I needed to be very honest with my doctor about my physical health as well as my mental health.

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I knew that the stress of everything could be very high, but I also knew that I needed help.  I needed someone who I could share all the burdens and business of having both parents with a dementia diagnosis.  While I do have both of my brothers, I knew I needed someone else with some medical experience to help me with things.  My sister-in-law was a perfect choice.  She has medical experience which makes it so much easier when we have to split up with one of us with Mom and one of us with Dad.  We set up a group text between my sister-in-law, both my brothers, and myself, so we could communicate effectively to each other about both parents. Early on, I mentioned that my parents had their wills already done and their POA financial and medical already picked.  All their legal paperwork was in order.

Even with that, you need a human support system. I don’t see how anyone can do this without help.

What other things can you do? Look at the questions below.  Sit down with your loved one NOW and go through these.  Write their answers down or better yet, video record them and their answers.  You may think it’s not important now, but later you will wish you had done this.  Sometimes you don’t realize just how much is gone until you start thinking about the things you can never go back and ask your loved one because they are too far in the dementia process to be able to remember.

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This disease takes so much away from us all even before your loved one dies.

fb_img_1541818060307Sorry folks, I’ve been pretty deep in thought about the process and how we’ve already lost so much of Mom and Dad even before they pass.  You start realizing you can’t just ask them the things you used to because they don’t remember.

Strive each and every day to make as many memories as you can.  Take lots of pictures.  Journal about your loved ones as well as yourself.  You never know if the day will come, so you will be so thankful that you did.

 

In Memory Of My Father, Richard Baldauf

By: Mary Pat Baldauf

On Sunday, December 11, my father, Richard Baldauf, lost his brave struggle with dementia with Lewy bodies (DLB). I am feeling so many emotions, but instead of focusing on me, I want to share an amazing story of God’s grace that I experienced firsthand

Mary Pat Baldauf

Five years ago, my father was diagnosed with dementia with Lewy bodies (DLB), a form of dementia that shares characteristics with both Alzheimer’s and Parkinson’s diseases.  From day one, I felt helpless because Dad could no longer enjoy the many things we used to do together like talk politics, do puzzles or work around the house. Up until this summer, I felt bad that I couldn’t do more for him, but that all changed when I found Gizmo, a rescue Pomeranian pup who changed Dad’s last six months in a way that I couldn’t.

Dad never really had indoor pets, but for years had a loving Chow mix named Lucy. As Dad’s illness progressed, Lucy came in during the day to keep Dad company. Unfortunately, Lucy was diagnosed with cancer in November of last year and died at home the following February. My mother, sister and I gave Dad some time to grieve, but we were anxious to get Dad a new canine companion, perhaps even a little lap dog. We made several attempts and even brought one home for a trial visit, but Dad was adamant that he didn’t want another dog.

As Dad’s somewhat rebellious daughter, I wasn’t going to take Dad’s refusals lying down. My sister and I kept our eyes open and even checked local rescue websites, but we hadn’t been able to find the right dog. Then one fateful Saturday, I was shopping at Harbison and stopped by PetsMart on a whim. There were several rescue groups on site, but I only saw puppies and larger dogs. I sighed in disappointment and decided to try again later.

On my way out, I spotted one last rescue group, Fairfield County Animal Adoption Center. At first glance, I saw no small dogs, but a volunteer told me they did have a rescue Pomeranian named Gizmo, but he was outside being walked. As we waited for his return, she told me that Gizmo’s first home was with a wheelchair bound man and that the dog would sit in his lap all day. That was my first tinge of hope. Dad used a walker, and any dog who rode in a wheelchair probably wouldn’t mind a walker. She went on to explain that when Gizmo’s owner passed away, the dog went to an abusive home where he was beaten with canes and brooms and generally neglected.

At that time, in walked a volunteer with a precious little bundle of fur that was Gizmo. I may’ve been on the fence before, but I was immediately determined to adopt Gizmo for Dad. I tried to call my sister to get a second opinion, but couldn’t reach her; I just took a giant leap of faith and adopted Gizmo. Janice screened me well and asked a lot of questions, but thankfully was as convinced as I that this was meant to be.

Fast forward to Mom and Dad’s house, where I walked in with Gizmo.  Dad had no more made that funny face and started to say no when Gizmo jumped in his lap; the rest is history. Within the hour, he was telling us, “This is my dog!” And indeed, Gizmo was Dad’s dog. He took to Dad immediately, and in the coming days, their bond grew exponentially. Quite simply, Gizmo gave Dad unconditional love and friendship that truly enhanced his quality of life in his final days.

These are just a few of the examples of how amazing Gizmo was for my dad:

  • Gizmo stayed by Dad’s side practically 24 hours a day, seven days a week. During the day, he sat on Dad’s lap in the easy chair in the living room, and at night, slept right beside him.

    My dad with his faithful companion, Gizmo

  • Gizmo made it easier for Dad to have guests.  With Gizmo, he always had something to talk about.  He could easily make conversation about the dog, while remembering current events or previous visits were more difficult for him.
  • In addition to the love he provided, Gizmo also became Dad’s smallest care giver.  On many occasions, Gizmo sounded the alert that help was needed. Once, when Dad was struggling to get out of the bed while Mom was making breakfast, Gizmo ran into the kitchen and barked until Mom figured out what he was trying to tell her.
  • Gizmo was loyal to Dad to the end. Gizmo camped out on Dad’s bed, and even when Dad could no longer speak, he nearly always had a hand on Gizmo. Even after Dad passed, we couldn’t pry Gizmo from Dad’s side, so we let him stay and say his goodbyes.

These days, Gizmo is still supporting Dad – this time by pouring out his love on my mother. He’s already sleeping with her, and with Gizmo there, Mom is never alone. For my sister and I, visiting Gizmo is like having a little of Dad right there with us.

In the opening, I mistakenly suggested that I found Gizmo. That’s not quite right. I was just God’s conduit, a way for Him to deliver the gift of Gizmo to my father. There are a lot of things I don’t understand about God, but this I know for sure: God bundled up his grace and love in that sweet, furry package especially for Dad.  And for that, I am most thankful.